My daughter’s bedroom is filled with medical pillows in all shapes and sizes. She arranges and rearranges. Stacks and contorts them behind her wobbly neck, under her swollen knees, around her dislocated elbows, sore ankles. At 37, she’s bed-ridden from extreme pain most days as her Ehlers-Danlos Syndrome (EDS) disease connective tissue and CVID immunodeficiency symptoms advance through her body.

I’m not so different from every mom who’d take on their child’s pain and sadness in a heartbeat if we could. I may be more anxious and tired from the worry, from juggling caregiving with a demanding full-time (thankfully) remote job with a wonderful, caring manager. More isolated and homebound with less socializing and not much getaway time, but so grateful for my sister and close friends who check in often.

But mom love is big endless love, isn’t it? This rare illness has grown as my girl has grown. Childhood doctors missed putting the seemingly unrelated medical puzzle pieces together. Casts on both legs did nothing to stretch tight Achilles tendons. She walked on tiptoes, fell often. We deemed her just clumsy, until we learned her knees were hyperextending backward, toppling her off-balance.

After years struggling on her own, she’s back living with us now, due to her advancing disability. I’m thankful she’s here vs. a 30-minute drive away in her own apartment where I’d worry if she didn’t answer her phone or check in early enough each day. Here, if she needs help in the middle of the night, I can hear her call – or hear her fall and knock something over.

I check each morning to make sure she’s breathing – a real risk for her for many reasons. If she wakes up to find her ribs or shoulder dislocated while she slept, I can help arrange her pillows. There is more loneliness all around these days. We’re inching toward inviting friends and relatives back in and getting back out in the world more on my daughter’s ‘good’ days. She’s been working virtually to organize a local EDS meet-up group for support beyond our family. But quiet matters for her on the hard days.

Her cervical instability often causes blurry, double vision so she’s no longer safe to drive. I juggle schedules to drive her to specialists – oncology, hematology, neurology, GI/GI motility, pain management, osteopathy, acupuncture, cranial sacral. An extra bumpy road, too sharp a turn or sudden stop can be painful for her fragile body. Even a little pain relief is good relief. We distract with NPR, an audio book, or favorite songs. It still takes a village, and I’m grateful for her Dad and stepmom who are able to help more from out of state now that they’re retired.

She came home from a month at the hospital last summer with JPEG feeding tubes for severe malnutrition and malabsorption, her weight down from 110 to 70 pounds. Too sick to travel, she missed my mom’s funeral. Sadly, the tubes came out within months after EDS spasms constantly dislodged them.

Another year later, she’s still malnourished and now advocating for TPN feeding. The long journey goes on, but we’re on this supportive family road of medical discovery together with love, patience and lots of hope.